Wednesday, April 28, 2010

Sean runs track through Special Olympics. He just started a couple of weeks ago but my husband couldn’t imagine a better fit for a boy bubbling over with energy. The team meets on Sundays at a high school track near our home. We didn’t know what to expect. Sean did soccer through S.O. and we were extremely happy with the outcome.

The first practice was unusually sunny, the grass was bright green cut short in the middle of the track. We decided that Sean would run the 400 and do the long jump. My husband stayed close to keep Sean focused.

They broke up into groups and Sean was paired with Jeff, a man probably in his twenties who had Downs. The buzz about Jeff is that he was clearly the fastest. He had a strong pace and good form and he was proud of his reputation. Sean and Jeff ran a practice run of the 100 and the 200, Sean’s pace strong, keeping in his lane a bit of struggle but full steam ahead. Jeff finished first followed by Sean. He waited for Sean and gave him a high five. I was near the fence waving madly at Sean, clapping and telling him that he did great. Sean gave me a quick smile and looked back at Jeff as Jeff placed his hand on Sean’s shoulder and said kindly,

“Let’s get back over to where the rest of the runners are.” They walked off together.

I wanted to hug Jeff and thank him for taking such tender care of my boy. Would this happen in a typical situation? Would a typical peer put his hand on my son, a gesture of friendship and kindness, or would a typical person not really know what to make of Sean? It didn’t seem to matter to Jeff. Sean was a little kid with fast legs and big eyes and he was looking out for him.

Later my husband and I waited by some benches near the track. A young woman, maybe twenty years old or so came up to us with her hand out and introduced herself,

“Hi, I’m DJ,” her hand searching for mine.

She wore an “Oregon School for the Blind” t-shirt and she had a tick disorder, maybe Tourettes syndrome and possibly had high functioning autism. We talked for a bit. She was going to do the shot put and the 200 -- these were the events that she felt where she excelled. At the end of our conversation she said simply,

“I enjoy enjoying life.”

My husband smiled at her and said, “We should all have that attitude, DJ.”

I couldn’t respond. I was falling through her words, lingering in the peacefulness that she brought to us. She was legally blind, had a constant tick and social impairment issues and yet she took nothing for granted -- the sunshine warming her bare arms, the rush of wind against her skin when she ran and the weight of the shot put in her arms. Life was not going to be wasted on her. She was not going to sit in darkness and loneliness. Absolutely not. She was grateful for the life she had been given as imperfect as it might have seem to others.

Sometimes I think our definition of success is too narrow. We translate success to the houses we build and lavishly decorate, the imported sleek cars we drive, the expensive vacations we take, the country clubs we join and the jewels that hang on our wrists and fingers. In our culture this symbolizes success -- we have arrived. We have made it.

And yet that Sunday, on a high school track field, I saw achievements that are intangible and often forgotten but are so much more important and valuable. I saw a young man take Sean under his wing, his generous feathers protecting and guiding my child. A man who some may feel sorry for or think how lucky they are to not be him never knowing how beautiful and kind he was.

I saw a girl, who many would guess carried the world heavy on her shoulders, but instead walked with the lightness of an angel, spreading her smile like wings and offering up hope and happiness. She said it perfectly, she “enjoyed enjoying life.”

How often do we ask ourselves this --- are we enjoying our lives? Do we work too hard for stuff that we think will make us happy; forgetting to slow down and to spend time searching each other’s hearts where happiness is truly housed.

I learned more from these two people on a Sunday in April then I have learned in a long while. Driving past this track meet, some may laugh at, make fun of, feel pity for or be frightened of my child and the other disabled athletes. But the members of that track team will have the last laugh -- they get it. They know that life is what you make of it regardless of limitations. That life is a present, wrapped and hidden deep in our souls. A present to be opened and cheerished.

Tuesday, April 20, 2010

A good friend and fellow writer invited me to getaway for a few days. She had rented a house down in the central coast of Oregon, a stone's throw from the beach. We would make the most of the time, our own little writer’s retreat. It was a trip I was looking forward -- no alarm clocks, no children, no responsibilities -- only my computer, a New Yorker mag, a book I had wanted to start reading, and a couple of rented dvds.

The house sat on a spit, the Pacific coast in front of us and the Alsea river behind us. I remember my first trip to the coast with the kids back in the summer of 2005. I had told a friend that I was going to get up early so I could get to Cannon Beach (north coast) before it got too crowded. She laughed and said,

“Oh, Katie, it’s not the Jersey shore. It never gets too crowded.”

And that is what I love most about the coast -- solitude is ample.

The further south you go on the coast, the less populated it is. There is so much seashore in Oregon -- gorgeous coastline, where often the sea meets the forests -- dramatic cliffs, colossal rocks bearing a pounding from crushing waves and the giant old Douglas firs spilling down the coastal mountain range, punctuated by frothy and fast waterfalls. The first time I ever went to the Oregon coast was in 1991 and it cleanly took my breath away.

We headed down on Thursday after getting our kids off to school. I left the worry and heartache behind me, my husband assuring me that everything would be fine and to go and enjoy the quietness. And that is exactly what we did.

I wrote a few poems and journal entries, went for long strolls on the beach, the weather mild and windy and read out on the deck. At night we talked and watched movies and one morning we managed to get in yoga, my mind restful and no longer knotted in worry.

Below is a poem I wrote at the beach. I tried to capture how I felt being there away from the noise of everyday life.

The Good Darkness

Today the sky is burdened With thick scarves of battleship grayThe ocean is erraticAbsent of rhythmAnd music.Pounding it’s foamy fistsAgainst the surf.

Even the seagulls are gone today.Perched on cedar shingled roofs in town,Scrounging in the parking lot of Ray’s GroceriesFor crumbs.Or on the rusty high school field bleachersForaging for spilled chips and popcorn.

I like it best,When the coast is readying for a storm.The scrub pines sway,The wind tickling their thick furFinding tempo and cadence And even laughterIn the bedlam.

I chip away in this gloomy space,And discover how good it can feel in darkness.To move my hips and limbs freelyWithout contemptOr judgmentSafely tucked away in obscurity.

My skin is stretching Like warm taffy pulled between a child’s fingers.My soul can no longer be contained.

Delight bursts at the seams --A tiger swallowtail With spun silk still wet on her wings Emerges from a shadowy cocoonInto startling morning lightTo float and drift GenerouslyAmong the willow and alder trees.

Friday, April 9, 2010

The lobby of the Hilton Waikiki is pristine -- creamy tile, orchids and hibiscus spilling out of pots, palm trees dotting the entrance, and kind faces with colorful leis resting on shoulders and chests. Our seven days of vaction had passed and we were leaving. Night was spilling over the resort, the ocean lit by tiki torches and the stars dazzling above. We waited to collect our luggage from the bellhop as the soft music of ukulele and steel guitar floated in the warm air.

Moments later it was shook up by Sean’s stimming. Hollering, squealing, hopping, clapping and slapping his legs. He was happy and yet the crashing of his body erased the serenity. The bellhops, tourists milling in the lobby, the employees at the front desk and the doormen all stared at him. I could feel the heaviness of eyes on us. Some with wonder, some with irritation, some with surprise and shock and some with pity. We couldn’t move fast enough to get our luggage (Sorry, it must be in the other closet. Just take a minute.)

Sean’s stimming kept building as he looked at his father and me and saw our discomfort and frustration grow. His brother went to him and tried to calm him but he just pulled away hard and began hopping and slapping the tile while squealing in a loud shrill.

“I’m sorry,” I said to the men at the bellhop stand. “He can’t really help it.”

They were kind and smiled, young men who were somewhat mildly entertained at Sean and impressed with is ability to leap so far. I turned away, my cheeks flushed and my nose and throat sweating with tears. The luggage finally showed up and we were hurried off in a taxi.

Once inside the taxi, the tears came. I looked out the window to hide from the kids’ faces but my oldest knew why I was looking away.

“Are you okay, Mom?” he asked sweetly.

“I’m fine, bug. Tired and ready to just get on the plane.”

The rest of the ride he entertained his brother playing an alphabet game. Even the taxi driver marveled at the kind boy who played so nicely with his little brother. He continued occupying Sean while we waited and waited at the airport.

When we came home I reflected on our trip (my first trip to Hawaii). It was a trip that I was completely excited about as I often forget how much work it can be to travel with a child with autism. I did a quick recap. I didn’t want the last memory to take away from the good moments.

Each morning we took turns taking Sean for a walk -- he woke up early and would get loud in the condo.

“You need to walk, Sean?” we’d ask him.

“Yes!” he exclaimed, his need to move and hop hardly contained in his little body.

We walked along the beach, stopped and watched the black footed penguins get fed, looked at the koi in the pond, and the flamingos, their bony legs like sticks, balancing on one foot.

We did so much on the trip, all credit to my husband who did all the research and planning and driving all over the island. We explored gorgeous, desolate beaches with smooth white sand and blue green water. My husband chased Sean out of the truck as he headed straight toward the waves, his arms and legs stretching forward, a smile thick on his lips.

Sean was happiest in the ocean, the pressure of the waves on his body providing great comfort. He wore his tight snorkel mask, his sunburned body floating over coral, watching the zebra fish chase in and out. He was delighted.

He didn’t do well at the resort pools. Too crowded, too much noise. My husband would take him back to the beach and I would stay with my older son who was tired of the sand in his shorts and the salt in his eyes. He was ready to chill in the hot tub or go down the water slides.

I’d be lying if I said there were no tough moments. There always are. Meltdowns, tantrums and stimming are a constant reminder to us that we live with autism. Sometimes we think what it might be like if Sean was neuro-typical. Would are boys be good friends and play together on the beach and at the pool? Could they roam a bit on their own? Would my husband and I be able to have freedom to sleep in and do what we like? Sean is nine years old but requires the supervision and care of a boy much younger in years.

And then I remind myself that it is what it is. I love him. I wish he didn’t have to struggle so much. I wish it could be easier for him, for all of us. But it is what it is.

I love the picture of Sean above. We were near a crowded lagoon and he was becoming increasingly uncomfortable. He began to hop. I snapped a quick photo in the throes of his stimming. But why I love the picture is because if you look closely you can see the world behind him was moving with color and noise, heat and energy and yet you get a still sense of release and freedom from his body and happiness in the movement.

His body is often out of sorts and stimming is the way he regulates. As a parent, stimming is something difficult to manage. I don’t want my boy to hop and squeal, his hands clapping loudly. People see the stimming and don’t get to see the boy inside -- the tender child who knows that he is different but can’t stop himself because when he stims his body feels right and the movement regulates him. This picture reminds me that there are moments during his stimming that are a flash of beauty. In this photo my boy is more than a spectacle -- my boy is soaring, above all the pain and distraction in his world. He soars, his fingers tickling the blue sky.

About Me

Currently, I am fulfilling the duties of Mom. Before this role I used to write and read poetry at the Poetry Slams at the Green Mill in Chicago and other cafes in the city. I am trying to find my way back to that, trying to incorporate this journey that I am on with my love of words and poetry.
I have two great boys, an equally great husband and a fairly lazy, unenthused cat. Add to that, I have lots of good, creative friends (one that manages to get me to go to the Shakespeare fest in Ashland,OR every year!!) and wonderful parents and siblings.
I am trying to learn to live in the moment, to jump in without too much analyzing and thought. This is new to me as I have always been considered a "worry wart". Wish me luck.

Helpful Resources

The Mom Blogs

Mt. Hood

Autism Study: Simons Simplex Collection Project

What is the purpose of this study?The Simons Simplex Collection (SSC) is focused on families with just one child with autism, called simplex families, which will provide insight into the most common and unexplained form of autism. This comes at an exciting time in history, in which breakthroughs in gene mapping, advancement of high-tech tools, and the latest brain research present a unique opportunity for progress.

Whom should I contact to get more information?Emily Champoux, Project CoordinatorToll free: 1-800-994-9701 or 206-616-2889 Email: emchamp1@u.washington.eduAdditional SSC information available at: http://depts.washington.edu/uwautism/research/simonssimplexproject.html